Epi-pen use & desensitization *UPDATE & Further Qs

[ChristaN]

I have a few questions. Dd#1, 11.5 y/o, has been allergic to a variety of foods since she was under 1 y/o. She starting have bumps on her face and hands and eye swelling when she began eating baby food veggies. Skin prick testing came up with an allergy to peas, tree nuts, lentils & eggs. She has never reacted to eggs & reacts to some tree nuts much moreso than others.

We recently saw an allergist b/c the mouth itching that she has been experiencing for yrs whenever she accidentally gets exposed to any of these foods seems to be getting somewhat worse and was accompanied by lip swelling a few months back. So the outcomes left me with a few uncertainties.

#1: He prescribed an epi-pen and sent her for RAST tests since he was pretty sure that the skin prick testing would just show us what we already know. His take on the epi-pen was that she should use it if she gets even mouth itching although he did say that another local allergist tells pts to wait for respiratory sx.

Which of these two approaches do those of you with epi-pens take? Dd has never had an anaphylactic reaction.

#2: He said that the thoughts on food allergies are changing & that, if some of the things we tested for on the RAST test came up positive but not serious at this time, the thought is now that you can maintain desensitization to those foods by continuing to eat them regularly. Thus, if you are showing a little allergy to peanuts, say, if you eat peanuts frequently, it might be less likely to progress to a serious allergy.

Has anyone heard of this? Also, could you then potentially desensitize to things like walnuts by eating small amounts of walnuts regularly? I'm not going to try this on my own b/c I don't want to risk the potential outcomes if this theory is inaccurate.

[earthmama4]

I would never risk exposure to nuts with an allergic child. Nut allergies can be very, very serious. We carried our epipen around religiously for two years before we ever needed it. I was so glad we had it that day - a small bit of a cookie away from home and his mouth, tongue, throat and hands started to swell! He had only gotten hives previously.

We have had to use an epipen several times in the last ten years. Personally, I would not inject on mouth itchiness alone, because that is one body system. Anaphylaxis is two or more body systems reacting, respiratory, circulatory, skin, or GI tract. If my son just gets an itchy throat, I give benadryl and watch him. Itchy throat plus nausea - he gets the epipen and benadryl. Itchy throat plus chest pain or tightness - epipen and benadryl. Does that make sense?

Another thing I was told is that it is always better to give it if you aren't sure. It really won't hurt her even if she's just having a mild reaction. They used to give epinephrine shots regularly to reverse asthma attacks. Its always better to err on the side of caution and give it, then to wait and not give it and end up with a full blown bad reaction that is difficult to reverse, or may become life threatening. We have BTDT.

I would not try to desensitize her by adding any foods to which she is allergic that she is not already eating. But sometimes I do think it is ok to allow small amounts of a food that she is already eating and seems to tolerate but tests allergic to to stay in her diet. For example, my DS tolerates eggs in baked goods but reacts to them plain. We allow them in his diet in that form only even though he tests positive for them. He tests positive for soy too, and yet he has never reacted to it, so he has products with small amounts of soy in them at times. I would keep the amounts small. And again, nuts are different. A nut-allergic kid really needs to stay away from them 100% IMO.

[sbgrace]

Never would a person wait for resp. symptoms. It may be too late at that point to save the life. You want to epi at the very beginning as you can get to a point when epi won't stop things enough. Most kids who die of anaphylaxis will have had an epi but most will have had it more than I think 15 minutes into the reaction. The sooner the person gets the epi the better the outcome. However, some allergists will say any two symptoms. Others will say any known exposure to the anaphylactic food. I can't imagine waiting for something life threatening to happen. For us anything beyond skin or any two of any sort of symptoms is epi, benadryl, 911.

The first anaphylactic reaction is just as likely to kill as the second or third! My son’s first anaphylactic reaction (first reaction we ever saw/first we ever knew he was allergic to nuts) was severe and biphasic. I feel very fortunate he didn’t die.

They just finished a peanut study where they fed children extremely tiny amounts daily and slowly worked up to the point where they could eat enough that they wouldn't die if they got trace. But this was a daily exposure of a set titrated amount--not random regular eating of varying amounts and all. And then a child could die too…surely your doctor wasn’t implying that you might feed an allergic child their allergen? I think/hope he meant that if a child outgrew an allergy or tested positive on RAST (which has a 50% false positive rate) but didn’t show any reaction symptoms you might want to feed it regularly so they don’t resensitize/develop an allergy. I think I resensitized my son to an outgrown allergy by avoiding. But I’d never feed him something he’s allergic to intentionally and certainly not nuts or anything else with such serious life threatening potential! FWIW, my son’s first ingested nut was anaphylaxis. His exposure prior had been to cross contamination and nearly daily as all my flours and oils and such were made on equipment with nuts…so that theory didn’t hold in his case!

[ChristaN]

Thanks. So, then in dd's situation, I am wanting to make sure that I am instructing her correctly on when to use her epi-pen at school as she will be carrying it with her as well as having a back up with the nurse. Would it be reasonable to tell her to go to the nurse for benedryl if her lips or tongue itch but that is the only sx? If it is accompanied by anything else (lips swelling, what else?), she should go the epi pen route?

You wind up always calling 911 if you use an epi pen, right?

[sbgrace]

This is a link that lists the body systems involved in anaphylaxis and signs for each one. http://www.allergyfreepassport.com/p..._and_kids3.pdf It's also really good information about your questions and worth both reading and sharing with the nurse/staff. I'd talk with them. Most anaphylactic deaths occur with kids who had reactions at school. Most often the nurse/staff aren't sure about the need for epi, gave benadryl, and things seemed better and then the child goes biphasic and dies. I don't mean to be scary or blunt as I'm dealing with all this too and I know it's overwhelming. But I'd be that blunt with staff so they know what not to do as she's in the most danger at school. They have to be willing to use the epi and call 911 with any suspicion. Hopefully she'll never have a reaction again of course! But they need to prepare for her to react.

Any allergist worth their salt would say any two body systems (link above) is epi and benadryl and 911. I simply can't fathom an allergist suggesting anything less than that. I *think* most allergists would say if she has possible ingestion of her allergen and lip itching do the epi. It's really a case of better safe than sorry. Anything beyond her lips itching is certainly epi without hesitation and she needs to know that can be her stomach cramping or nausea or feeling dizzy or any number of things on that list. http://www.theucbinstituteofallergy....igns/index.asp Here is a link about early signs. A significant portion of kids with nut reactions will not have skin but GI and cardiovascular collapse. And a reaction one time can be different the next. My son's first reaction started with hives and throat swelling. When he went biphasic 2.5 hours later it was diarrhea, vomitting, hives, facial swelling, and blood pressure plummet. The second time (this was a trace reaction) it was diarrhea and (we think) blood pressure. So make sure they aren't waiting for lip itching or skin to decide to use the epi.

You always call 911 when an epi is used. They give you 10 to 15 minutes or less (sometimes much less, particularly w/nut reactions) before the effect wears off and the anaphylaxis continues. So it buys you time to get to help basically. She should have two epi pens--nuts often need two initially and 10 minutes isn't much time no matter what.

Worth noting: if a child goes to the ER w/anaphylaxis you stay 4 hours because biphasic reactions happen 25% of the time and those are usually more severe/deadly than the initial reaction. My son went biphasic at around 2.5 hours. Not all ER's know enough about anaphylaxis and they will release a child without observation. You stay in the waiting room the full time if that happens. People have had to give their child in epi in the ER waiting room after doctors refused to hold their kids. Don't expect the ER docs to know what they are doing.

[ChristaN]

The sx dd had as a baby that precipitated the skin prick testing were eye swelling shut and raised, red dots on her hands and face. The allergen seemed to be peas in baby food veggies. I just made all of her baby foods after that.

Since then, the only times she has had any reaction has been when she has accidentially eaten something like a veggie dish that has peas or lentils in it or twice that I can remember when she ate chocolate or a granola type of item with cashews or walnuts. Those two nuts have always been the worst. Usually, the sx are just palate, tongue, and lips itching.

The most recent exposure to walnuts was that same itching but also included her lips swelling.

The allergist said to use the epi pen even for mouth, lips, or tongue itching. He did seem to err on the side of caution, though, and said that other allergists in town take different approaches.

I'll look over those links you provided. Thanks! Dh is going to have to be convinced to take this more seriously, though, b/c he thinks that the epi pen was overkill & has, in the past, intentionally attempted to feed dd things to which she is allergic as he thinks that she is exaggerating.

[sbgrace]

I'd go with your allergist and do epi for lips. I would for my son. Cashew is the most severe and deadly of anaphylactic reactions.

Originally Posted by ChristaN

I'll look over those links you provided. Thanks! Dh is going to have to be convinced to take this more seriously, though, b/c he thinks that the epi pen was overkill & has, in the past, intentionally attempted to feed dd things to which she is allergic as he thinks that she is exaggerating.

Yes, he does. Did the allergist speak with him? There are some good videos out there. I'll try to find some. edited to add: I can't find the one I was thinking of that I showed my (skeptical) dad. I see others but I can't watch them with my kids here possibly watching/listening.

[ChristaN]

Originally Posted by sbgrace

Yes, he does. Did the allergist speak with him? There are some good videos out there. I'll try to find some.

No, I took her by myself. He works some pretty odd hours (actually we both do), & I do 99% of the parenting stuff.

[ChristaN]

Okay, so I have some more questions. I just spoke with someone at the allergist's office re the RAST test results. She tells me that nothing came up as a significant allergy. Even things like cashew were minor -- and that was the biggest IgE response. Some of the things that she reacts to showed nothing on the RAST tests.

So, they are suggesting that it may, in fact, be oral allergy syndrome and not a true allergy. They want me to begin food challenges at home -- one food at a time.

Does this sound reasonable and do you think that I can now safely assume that she doesn't really have significant food allergies? I know that you can get false positives from RAST tests, but from what they said, you don't get false negatives.

[Therese's Mommy]

I don't know anything about OAS, but I personally would insist on in office challenges to be safe.

[ChristaN]

Insurance won't cover the dr's bills if we do it in office b/c he says that it is unnecessary. I don't even know if they'd do it in the office b/c they don't think that it is needed. They said that we have the epi-pen if, for any reason, they are wrong about the allergy. They aren't suggesting that I feed her a bowl of cashews, but that we give her a small amount, wait 20 mins, then try more, etc.

Dd doesn't want to even try b/c she said that I don't understand how unpleasant it is to have your whole mouth and throat start itching.

[sbgrace]

Oh my goodness! They told you to feed a child who has reacted to cashew and even had a "mild" RAST positive cashew and see what happens?! Cashew is responsible for the most deadly anaphylactic responses and it doesn't matter how big her RAST score was. In fact, I believe there are some issues in terms of accurate IGE levels in tree nuts, some kids have more accurate skin prick vs. Rast results and vice versa, and I know sesame allergy (highly correlated with Cashew) has serious problems with accuracy in testing (meaning you can have false negatives for sure). Any allergist would say "reactions trump test results" and no one who didn't want a liability case on their hands would suggest feeding a child with a potential tree nut allergy tree nuts in their home to see what happened. I'm really, really flabbergasted.

And OAS is an allergic response and can, all by itself, cause anaphylaxis too. My son has some suspected OAS to fruits. Our allergist treats it like an allergy and he can't eat them.

I would leave the practice and see another allergist over this. But no I would not feed her cashew, whether you're waiting with an epi pen or not.

[ChristaN]

She hasn't had skin prick testing done since she was under 1 y/o, though, so who knows what she'd react to on that anymore. I suppose that we can just go along as we have avoiding those things that make her mouth itch and keeping the epi pen handy should it be needed. However, in a year when the prescription expires, she won't be getting another prescription unless we go to a different doc and do more tests that come up positive or we have a really bad reaction btwn now and then.

eta: they said that the lip swelling was "idopathic" (unknown cause) but probably not related to an allergy. I am getting a copy of the RAST tests and their suggestions about food challenges at home sent to me in writing.

[Therese's Mommy]

Originally Posted by ChristaN

She hasn't had skin prick testing done since she was under 1 y/o, though, so who knows what she'd react to on that anymore.

Well, I found out this week that results can change on the skin prick test. My 33 month old had a skin prick test done at 10 months that came up negative to egg. I tried to feed her egg and she refused. Six months later the RAST came up positive for egg. A year after that her number on the RAST had dropped significantly. So, this week we were going to do an in office challenge with egg. Before doing it the allergist wanted to repeat the skin test with the egg (I thought this was overkill). I told her that it had previously been negative. But she told me that testing a child under a year old is less accurate. Sure enough she got a huge welt from the egg, so no in office challenge. Anyway, any doctor worth anything will acknowledge the limitations of testing. They know it is just not accurate all the time. Our first allergist swore by the testing. She was terrible and we got rid of her. Our current allergist uses the testing, but knows it in no way tells the whole story. I agree you should look for another allergist. Do you have any children's hospitals near you? That was how we found a good allergist we went down to Children's Hospital of Philadelphia. It is over 2 hours away, but completely worth it.

Beth

[ChristaN]

We do have another allergist option locally. Here are my issues:

1) Our insurance has paid for one allergist consult & testing (or at least part of is -- $300 is deductable) at our ped's referral. Since there was no problem found, any further consults & testing are totally out of pocket. This isn't easily w/in our budget. Allergists are quite expensive so we'd be looking at many hundreds of $s.

2) We can just keep avoiding things that bother her & we do have the epi-pens already, so this would work as well as anything for the next year. The problem becomes when those epi-pens expire & the forms that the allergist already signed for the school expires next Feb.

If she has not had a serious reaction w/in that time, he won't re-write the scrip or fill out the form for the school & she won't be able to carry an epi-pen at school anymore or have one in the nurse's office. So, we either just get through this year & find a way to deal with that next year by consulting another allergist as a follow up rather than him or we try the food challenges and see what happens. If the response is significant, perhaps we have fodder to convince him that the RAST tests were inaccurate.

Of course, I'd rather that the RAST tests were accurate and that this isn't a serious allergy and, of course, I don't want to play around with this at home and have to use an epi-pen to prove a point. We are supposed to contact him via phone in approx 11-12 months to verify that dd has had not major issues and then assume all is well, exit from the school plan, let the scrip for the epi-pen expire, etc. Perhaps we can self-refer to that other local allergist at that time in lieu of the check in with the current one. I can wait and cross that bridge later, I suppose.

[Therese's Mommy]

Will your ped help at all? I know my ped has offered to write a scrip for the epi-pen and I *know* he would write a note if I needed so that dd could carry it at school. I guess that would be my next thing to try. Any chance that your ped would refer you to another allergist and that the insurance would then cover it? Just thinking out loud here.

Beth

[ChristaN]

No, we went the ped route first & she wouldn't write a scrip for the epi-pen w/out proof in her file that she has a severe allergy. I actually didn't ask the ped for an epi-pen just asked her opinion as to what we should do. Her nurse called back stating that she wouldn't prescribe an epi-pen w/out RAST tests showing a severe allergy.

[mbbinsc]

We went through a few allergists before finding one that I am OK with ( one even told me the only thing I could do for DD was keep a supply of Epi-pens). Your DD is old enough to communicate what is going on when she eats offending foods. That should count as something to either your ped or the allergist. You could also call your insurance company and get prior approval for another allergist. It would be cheaper for them to get her retested than to pay for an ER visit.

My DD is IgE allergic to nuts. She gets hives with contact. Does your DD? My DD , also, had a GI reaction to fake mac and cheese that was colored with annatto. This was not on the panel of things to test at the allergists. He told me that I could get some and put on her skin to see if there is a reaction.

[lnitti]

I am surprised they will not do a SPT to confirm the RAST results.

Our allergist did a SPT to confirm our RAST - specifically to verify the ones negative on RAST. Some came back as negative on the RAST, but were quite positive on the SPT. For example almonds.

Allergy tests are not perfect. They are very error prone, and I am surprised he wouldn't use two types of testing to be sure.

Most insurance companies do have a provision for obtaining a second opinion. Can you ask for approval to obtain a second opinion from another allergist? Maybe if you word it in terms of a second opinion, they would give you the approval.

[ChristaN]

Originally Posted by mbbinsc

My DD is IgE allergic to nuts. She gets hives with contact. Does your DD? My DD , also, had a GI reaction to fake mac and cheese that was colored with annatto. This was not on the panel of things to test at the allergists. He told me that I could get some and put on her skin to see if there is a reaction.

According to the RAST test, dd is not IgE allergic to anything (or has very minimal IgE responses to a few things, and none to others). The rubbing it on the skin isn't a bad idea. Maybe I can rub some cashew oil on her and see what happens rather than feeding it to her.